The cancer killer they won’t pay for – Telegraph

Five years ago, Dido Davies, the wizard who advises me on all my writing and a brilliant editor, discovered she had a growth the size of a grapefruit on her pancreas. It was a neuroendocrine tumour, or Net: the cancer that killed Steve Jobs. NHS surgeons immediately performed an eight-hour operation to remove it. Two years later, the cancer was back and she began chemotherapy.

Meanwhile, I started searching the internet. Nets are relatively rare cancers, have few successful treatments, and come low on the list of research priorities. They are also comparatively slow-growing, which is why Jobs, the former CEO of Apple who was diagnosed in 2003, was able to invent the iPhone and the iPad. If he’d had ordinary pancreatic cancer, he’d have been dead before the MacBook.

To my astonishment, I tracked down two gene therapists in Sweden who had engineered a virus specifically to destroy this type of cancer. Photographs they’d published in leading medical journals showed Nets in mice melting away. Yet when I rang the lab, they told me they were going to throw the treatment away without testing it on humans.

Because Prof Magnus Essand and Dr Justyna Leja of Uppsala University had published the results of their work, they could not secure a patent for this “cancer-eating” virus. Without a patent, no business would fund the human trial, because there was no profit to be made. Two million pounds was all they needed – less than Apple earns in seven minutes.

Two month ago, I wrote in this paper expressing my despair and frustration. Only a proper human clinical trial can tell if this new treatment will eat up human tumours, too. If the virus works, it could benefit not just the tens of thousands of people with Nets worldwide, but other cancer patients as well, because it could be adapted to attack many types of tumour.

Two weeks after my article appeared, The Daily Telegraph ran a feature by Dominic Nutt. Dominic has worked for aid agencies in war zones and refugee camps around the world. He’s been shot at, bombed and kidnapped. Yet when his doctor told him in January that he had a neuroendocrine cancer and that he might not see his younger daughter’s first day at school, he broke down. After reading my article, he decided to go public about his illness in the hope of inspiring someone to come forward with that £2 million.

The next day Dominic and I began a campaign. If venture capitalists wouldn’t invest in this potential new therapy because of the lack of obvious cash returns, then we would take the cause to the people and raise the money by crowd-funding. Dominic contacted a social media expert, Liz Scarff, while I got hold of the Net Patient Foundation, and brought in a publicist friend. We held our first meeting on the balcony of a Wetherspoon’s pub in Victoria train station.

We’ve called it the iCancer campaign. It launches this Friday, October 5 – exactly one year after the death of Steve Jobs. October 5 is also my friend Dido’s birthday. Thank heavens, she is doing well.